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-   -   A million miles before I sleep... (http://www.cockytalk.com/showthread.php?t=209771)

Acockolypse Now 09-02-2014 01:55 AM

A million miles before I sleep...
 
Iíve been meaning to start this thread for a while now, Iíve even started the process a few times and then quit. Itís a hard thread to start, but I have the feeling that once I get going itíll get easier. Basically I want this thread to accomplish two main things:

1. Update you guys on whatís going on with me
2. Have a place to post my random thoughts, much like GHís Crashbox thread

I left a good many of you hanging last year when I posted about some tests I was going through. The results came back, and they were not what I wanted to hear. In April of 2013 I was diagnosed with ALS, which was confirmed through a second opinion in July of the same year. Thankfully the ice bucket challenges youíve heard and seen so much about have raised awareness of ALS, to the point to where I donít have to explain it quite as much as I used to.

For those of you not familiar with it, ALS is a degenerative neuromuscular disease that attacks both the upper and lower motor neurons. It slowly (and sometimes not so slowly) atrophies muscles until they become paralyzed. Although it only seems to affect voluntary muscle systems, your respiratory system is among those. It is fatal, there is no cure, and there is no effective treatment. Average life expectancy for ALS patients is about 2-5 years from initial diagnosis.

I am, as they say, on the clock.

The question that most people ask me is how Iím doing; so let me give you a snapshot of where Iím at. For the most part Iím good. If I donít want someone to know I have ALS, they donít know. I can fake being normal, but thatís getting harder and harder to do. The area currently that is most affected by it is my right hand and arm. I can no longer type with both hands. Right now I type with the left but peck with the right. Itís much slower than I used to be able to type, so typing stream-of-consciousness type stuff is harder and harder to do. I can still walk fine, even run really, but long distances are tough and I tire easily now. Perhaps the worst is that itís affecting my breathing. ALS is very individual and it progresses differently in everyone, but having if affect my breathing at this early stage is bad. It means Iíll have to make some very difficult decisions soon in terms of prolonging my life or not. For the most part, however, my life hasnít changed significantly, which has surprised a few of my doctors.

Mentally Iím really, really good. I have an amazing family, a deep and abiding faith, and an incredible network of friends. I am extremely blessed.

Iím also deeply moved by the concern and care that so many of you have shown me in posts and through PMs. CockyTalk is an amazing community and I love almost all of you. Almost all.

Iím still going to try to do my wrap ups this year, and Iíll continue to be a smart-ass in everyone elseís threads. Longer posts are hard for me now, which is why youíve probably just seen me drop bombs and leave lately.

You might be a little curious about the title of the thread. It combines one of my favorite poems, Robert Frostís Stopping by Woods on a Snowy Evening, with the title from a Don Miller book, A Million Miles in a Thousand Years.
http://storylineblog.com/wp-content/...0785213066.jpg

Spareparts recommended the book to me once he found out. I got it, and itís helped immensely. Iím telling a fantastic story now Spare, thank you.

I still work, and I will until I cannot. Iím writing a childrenís book to help children deal with grief, and Iím making movies for my girls, one for each birthday until they're 18. Giving them advice and love on the birthdays I wonít be there to see.

At first I tried to wrap my head around the fact that I was dying, but eventually I realized thatís the wrong way to look at it.

Iím not dying. Not today anyway, and probably not tomorrow.

Iím living, and hereís who Iím living for.
http://www.simpleprimate.com/user_im...each_girls.jpg

Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.

My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.

He gives his harness bells a shake
To ask if there is some mistake.
The only other soundís the sweep
Of easy wind and downy flake.

The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.

TonyVercetti 09-02-2014 02:23 AM

Re: A million miles before I sleep...
 
Great thread. Ill be kooking forward to seeing you post in here :)


Also will be praying for you. You seem likr a very strong person. And i think what you are doing for your daughters is awesome.

JerseyBird 09-02-2014 05:59 AM

Re: A million miles before I sleep...
 
Well that certainly personalizes the ALS fight a bit more even than before. Thanks for your courage and strength in the face of it, although I'm sure you'd rather have to need less of them. And very glad to hear that your faith is strong. My favorite verse is John 16:33 - "In this world you will have trouble, but take heart! I have overcome the world."

Can't really add too much that you don't already know, but Leanne & I will be praying for you and your family, and thanks so much for sharing your story and for all your posts on here. Keep going the miles :cocky:

ccured 09-02-2014 06:32 AM

Re: A million miles before I sleep...
 
Thoughts and prayer man. Keep living everyday to the fullest. What your doing for your girls is great.

Legalman72 09-02-2014 06:32 AM

Re: A million miles before I sleep...
 
God bless you, Acock. That's a beautiful trio you have there. Praying for you.

Cockypantherfan 09-02-2014 07:59 AM

Re: A million miles before I sleep...
 
Keep living positively man. We all appreciate you in the CT arena and are fighting on your side.

lencho30 09-02-2014 08:53 AM

Re: A million miles before I sleep...
 
Yep, you got a long way to go before you sleep. Keep on going!

On a lighter note, stay focus!

GH 09-02-2014 09:13 AM

Re: A million miles before I sleep...
 
Fighting Gamecock Spirit through and through

gamecock88 09-02-2014 09:20 AM

Re: A million miles before I sleep...
 
Sounds like your heart, mind and soul are all in the right place for this fight. As a father myself, your story helps put the events of the past week into proper perspective. I'll be cheering and praying for you and your family. Fight on!

cockybusiness2 09-02-2014 09:33 AM

Re: A million miles before I sleep...
 
You have my prayers. You also have my RESPECT.

I, like most people have our daily problems that we must deal with. But after reading your post today, mine just seem so petty.

Dealing with your mortality can not be easy. The strength that you are showing is inspiring. May the Good Lord bless and keep you and your family.

TKE226 09-02-2014 10:03 AM

Re: A million miles before I sleep...
 
You are an inspiration to us all who forget what life is really about and get caught up in the day to day stuff.

Keep fighting the fight and we are all with you.

M.C. 09-02-2014 10:14 AM

Re: A million miles before I sleep...
 
Dang man you are one of the strongest people I know .. You are truly an inspiration just like a Gamecock you will never give up

The Yancey 09-02-2014 10:22 AM

Re: A million miles before I sleep...
 
A quarter century ago I was given 6 months to 5 years. I was told to put my affairs in order. I had trained with Kubler-Ross and many others and had worked with death and dying issues early in my professional career. I was involved with Dr. Jerry Jampolsky's organization at the time. That gave me a head start in dealing with my own potentially imminent demise. I did what I could medically. I did what administrative things were necessary such as wills and the like. I chose not to go gently into that good night though. I decided to live, to live until I died. 25 years later and I am still doing that. This book helped me and many of those I worked with.

http://img2.imagesbn.com/p/978160671...1_s260x420.JPG

http://berniesiegelmd.com/

http://jerryjampolsky.com/

You have my number. Call as needed!

Regalcock 09-02-2014 10:44 AM

Re: A million miles before I sleep...
 
Quote:

Originally Posted by Legalman72 (Post 4246792)
God bless you, Acock. That's a beautiful trio you have there. Praying for you.

Ditto this. Good luck brother. Great to have a family like yours.

uscgmck 09-02-2014 10:45 AM

Re: A million miles before I sleep...
 
In a word "BATTLE"

markp_vip 09-02-2014 10:46 AM

Re: A million miles before I sleep...
 
You are a Strong Man! I'm praying for you, you're family, and a cure for ALS!

2000grad 09-02-2014 01:03 PM

Re: A million miles before I sleep...
 
I really don't know what to say except that I am deeply moved by this post and your initial post about your condition. I started praying for you when I read your initial post. Thanks for the update

uscjeremynca 09-02-2014 01:10 PM

Re: A million miles before I sleep...
 
Thanks for the update. Best wishes in your battle. It's sad that after 75 years we are no closer to a cure for this thing than the day Gehrig made his speech.

What a horrible disease! Keep fighting, and more importantly, keep living!

TheMule 09-02-2014 02:57 PM

Re: A million miles before I sleep...
 
Thoughts & prayers are always with you and your family.

trapper82 09-02-2014 03:07 PM

Re: A million miles before I sleep...
 
Quote:

Originally Posted by uscjeremynca (Post 4246984)
Thanks for the update. Best wishes in your battle. It's sad that after 75 years we are no closer to a cure for this thing than the day Gehrig made his speech.

What a horrible disease! Keep fighting, and more importantly, keep living!

Oh but we are closer. The Ice Bucket Challenge came at an interesting time for ALS research.

Quote:

In February, researchers revealed how ALS is spread from neuron to neuron. It seems that a mutant of the enzyme SOD1 causes the cells to go haywire. The researchers also found that certain antibodies can block SOD1 from being transmitted, which could potentially halt the progression of ALS. The method has yet to be tried in humans.

The ALS Ice Bucket Challenge has arrived at an "exciting time" for ALS research. With new drugs undergoing clinical trials and promising research pathways being elucidated, the money raised is sure to be put to good use. To donate, visit the website of the ALS Association.
http://www.realclearscience.com/blog...te_108800.html

You are one of my favorite posters Acock, thinking of you.


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